New Member living with SAH - By subzero

[subzero]

Hello Everyone

 

Someone you know called Winnie introduced me to BTG four weeks ago.

 

I have since read many of your stories and comments and found this website most helpful.

I have also read the book- A Dented Image and we both watched the survivors video yesterday evening.

 

My wife and I are 57 and she survived a SAH three and a half years ago. Since leaving school at sixteen-she had never had a day off work with illness.

 

Four years ago my wife was diagnosed with Rheumatoid Arthritis. The prescribed Methotrexate caused her acute kidney failure and she  ended up in hospital. Three weeks of undergoing tests still proved unsuccessful and she developed a DVT in her leg. This meant daily Dalteparin injections to counteract the clot. She was transferred to a renal ward and at week five underwent a kidney biopsy made more complicated because of the DVT.

 

Now at week six in hospital and two days after the biopsy I paid my daily visit to see her But instead of sticking to my usual visitation time of 2.30pm, I went early that day at 2pm. She told me that during the night she had a massive headache- at five past two she became unconscious in front of me-I rushed for a nurse and our SAH journey began! Much later I was to reflect on what might have been if I had delayed my visit until 2.30pm! Anyone passing would have thought she was just asleep.

 

With the alarm raised-she was put into an induced coma and transferred to ATU. These were the worst moments of my life- I was told that her chances of survival were 50%.

 

After two days in ITU she gradually came out of the coma and proceeded to pull out all the blood lines and tubes attached to her.

 

By mid week I was told that they had also made a diagnosis about the original problem-she had WG (Wegeners Granulomatosis)-a serious immune system disease where the body`s immune system destroyed it`s good cells. Thirty years ago the life expectancy was five months-now with medical advances hopefully it could be put in remission with powerful drugs.

 

Also prior to hospitalisation she had suffered the onset of shingles-

 

I am sure all of you can imagine how I was or was not coping with my wife fighting to survive these serious problems.

 

I will continue with this link and explain her progress later and hope that our experiences three and a half years on will help someone and also that we can be helped by your comments too.

[Carolynusa]

Subzero - I am crying as I type this.  You and your wife have gone through hell.  I am so so so sorry.  It's hard for me to speak more about it right this minute.  I'll check back in later.  Please take good care and, as Win would say, "be well".  

 

Love and hugs, Carolynusa

[Macca]

Welcome to BTG!

 

I wish you'd found us earlier so we could have helped more when you really needed it!  You've clearly been through the mill not only with the SAH but also the rheumatoid arthritis, which I know is a severe form of arthritis (I have family history of it).

 

Reading between the lines you've had little time to think about yourself and what you have done so far for your wife is little short of miraculous.  A number of us have had the onset of a SAH where the symptoms have not been recognised immediately by those around us and it is certainly an area where public health messages could be improved along the lines of the Face, Arms, Speech, Time campaign for Strokes.  None of those things applied to me - I was just lucky I realised I needed help and called for it before I fell unconscious and there was someone within nearby reach.

 

Please keep posting, particularly if you need help or support, don't keep battling in isolation or bottling it up - we all need each other!

 

I wish you both well.

 

Macca

[Carolynusa]

Subzero - I have reread the story of you and your wife's journey.  Two things stand out to me:  1)  You are a wonderful husband to your wife.  Thank God she had you and you have a kind of intuition with her that comes from love.  I believe you went into that hospital a half hour early that day because you knew you should.  2)  Your wife has had a very big struggle with her health - her whole life.  For what reason?  None..but fate.  Fate brought her to you though and it is probably the best thing that could ever happen to her under her circumstances.  

 

I worked with health insurance for years and am aware of the "one day they're great/one day they're horrible" rheumatoid arthritis medications.  They do scare me.  I have some symptoms of that disease - it runs in my family.  Hope the medications are much safer if I ever have as much pain as your wife must have.

 

And...shingles terrify me!  Have not had them but know several who have.  I can't imagine having that come up on top of everything else.  Your wife is a strong person (with your help) to have dealt with all of that and still be able to sit with you and watch a video or read a book.  

 

I was in a coma for a month but would occasionally wake long enough to rip out all my iv's and things they had crammed down my throat.  lol.  Your wife has spunk that's for sure!  My family was told I had 20% chance of survival but were by my side for 6-1/2 weeks.  I truly believe it made a difference just as your presence made a huge difference for your wife's healing.  

 

At any rate please tell her there are positive thoughts flying her way.  Keep in touch.  Don't give up.  So glad you met Winnie as she is a kind of angel in my opinion and has sent you here where you can unload and get loving support.  Maybe soon you and your wife can sit together and read a bestseller that is just for fun or watch a popular movie and eat popcorn together.  It will happen.  I believe it.

 

Take care.  Love to your wife.  Keep in touch.  Win would say to have your wife sing.  I believe that works too.

Carolynusa

[subzero]

Hello again,

 

To follow on from my earlier comments-

 

From the moment my wife went to ITU I had great support which meant so much as I was at my wits end. Two of our best friends stayed with me for several hours while we waited at ITU and they kept me well fed everyday. I had called my work because I was due to be working the next day- I was given indefinite leave right away- and my local church members kept in touch constantly throughout the week .I really valued this support and tried to text all these friends each night to keep them informed-this helped me cope emotionally too

Our thirty year old daughter flew up from Manchester to be with us. .

 

During the week the Consultant explained to me that the Wegeners was a difficult condition to diagnose-it affects the kidneys, nasal vessels and lungs and joints and GP`s can often misdiagnose the symptoms- which like SAH- if not recognised quickly can lead to major organ complications. Apparently the initial Rheumatoid Arthritis diagnosis was wrong and the symptoms were actually the Wegeners disease.

 

By the end of the week in ITU my wife was given a high dose of drugs to try and knock the Wegeners into remission and she was released back to the ward.  We were told she would have to wait two weeks for the blood around her brain to settle then an ambulance would take us to Edinburgh Hospital to have the haemorrhage coiled.

 

During this fortnight her speech was improving but she was so weak she was unable to move much. I did not understand the significance of this, but during one of my visits in the first week-although my wife was very poorly-she suddenly proceeded to give me a terrible telling off! I was devastated at the time because I was exhausted with trying to cope with all that was happening- but I now realise that this was the SAH at work! 

I was told that she would continue to receive a reduced dosage of the drugs for maximum of three months as any longer could prove to be cancerous.

 

The two weeks felt like an age before we finally set off for Edinburgh.

 

Before we left the consultant was very frank with me. He said-successful coiling will result in a return to the renal ward within a week-however problems during the coiling could result in a return to a Neurological ward depending on the extent of any problems. Stark but fair-but tough on my delicate state of mind.

Two conditions which I had known very little about were now becoming the centre of our lives

 

Thanks for .staying with me so far-BTG`s!

[Daffodil]

Hi subzero, I'm so glad that Win sent you this way as I am sure people will learn from your experiences, having a partner point of view is so helpful but my goodness you have been through it both of you.

I am looking forward to hearing the rest of your story and I hope your wife is doing well in her recovery .

[Macca]

Hi,

 

After an SAH it is not uncommon for the patient to be aggressive, to swear without embarrassment, to verbally hurt those around them - it isn't personal, it is just that you are there! I was just the same.  I also told a nurse she was the most beautiful person I had ever seen - right in front of my sister and fiancee!  I didn't know I was doing it and I only know now because the girls told me that is what I did.  I still, to this day have no recollection of the event myself and wouldn't recognise the nurse if I fell over her (no disrespect intended).

 

A SAH is a major event whatever other problems also exist, and its effects should never be underestimated.  The extent of the injury and its effects vary from person to person, and because you can't physically see it like, say, a scar, or plaster of Paris on a broken arm, witnesses seem to be amazed to realise there is still a problem.

 

Internal injuries, not just brain injuries, often hide serious problems, so please be tolerant of unusual behaviours' (I say unusual rather than odd because of the connotations people put on that word) as they are not intended even though they may feel hurtful at the time.

 

Once you understand the problem you can exercise this tolerance.  It is intolerance from people further afield, outside of the hospital environment who can be even more hurtful because they can't see the injury, don't want to know about it and therefore can't be tolerant of it.  When you tell them they either don't believe you or say a rather trite 'Oh sorry, I didn't know' and then carry on as though nothing has happened and then avoid you like the plague in future!

 

You've gone through a terrible time and if we can do anything to help, we're always here.

 

I wish you both well.

 

Macca

[subzero]

Fast forward to today-lovely meal in Frankie & Bennys then to Cinema to watch Stephen Hocking-A Theory for Everything. Whatever you think about his theories-you have to admire and relate to his courage in adversity-

 

Yesterday we visited my wife`s consultant for her quarterly clinic. I had emailed on Tuesday commenting that for 3 and 1/2 years we had no follow-up about her SAH and I asked if we could see the scans taken after the coiling. We were shown the scans which I found very interesting although my wife was a bit unsure about wanting to look at them. We were told that the aneurysm was not a `berry` type-but rather a long sausage shaped weakness probably caused by the Wegeners disease.

 

Back to our Ambulance Trip to Edinburgh Hospital for my wife`s coiling procedure. --

 

I had time to reflect on a traumatic few weeks. Seeing her so weak in ITU -with so many wires and tubes-a large red sore had appeared below her nose from the oxygen use-and with every breath there was a cough-and she could not keep awake for more than a few minutes. But midway through the week in ITU she whispered to me-` It`s the anniversary of my father`s death this week-can you arrange to put a wreath on his grave` (which she did annually) and she told me the florist`s name to order the wreath!  I could not believe I was hearing this considering how ill she was.

 

Also I recalled going to my workplace the week after she came out of ITU. to tell them what was happening-they could see I was fragile and guided me into a private room-I just broke down and cried-I was scared my wife would haemorrhage again as she was complaining about pain in the back of her head- they hugged me and I hugged them -this release of emotion was such a help to me (I never thought I express myself like this) but I was among great colleagues and after a while I composed myself and we were able to have a coffee together and have a `catch-up` about work.

 

(How Winnie`s hubby coped with her year long struggle in hospital amazes me-)

 

The hospital had given me the address of a Guest House close to the Edinburgh hospital and this was to be my home for the next eight days in our journey.

[subzero]

We arrived at Western General in Edinburgh mid Sunday afternoon and were welcomed immediately by the staff there. We were advised that the coiling was scheduled for Thursday if all tests went well. At this point my wife`s speech was slow but clear to understand. Her vision had been affected by SA. Her friends had bought her a magnifying sheet to help her read better. She tried to text me with her mobile but the keys were to small and she kept confusing alpha and numerical. Despite the seriousness of her condition-her confusing messages made me smile.  

 

Our two close friends generously took time out and motored down to visit her on Wednesday. They treated me to a nice meal before returning home.

 

Then-it was Thursday morning-830am.

 

During the week the consultant whose team would be carrying out the coiling had explained everything that was going to happen-he was very thorough. How they would carry out the procedure via her groin-first while she was still awake and closing the aneurysm with a balloon before sedating her completely and then putting the coils in place.

 

I followed my wife as the porter pushed her bed to the Theatre entrance- another moment I will never forget as I let go of her hand and she disappeared into theatre.

 

I was alone now-and had already decided how I was going to spend the time- I walked the few miles to the Botanical Gardens- and just walked and walked around this peaceful tourist attraction.

 

I returned to the hospital at noon and met her consultant who said that the procedure was going well. The balloon procedure was a success and now his team were putting the coils in place. He smiled at me saying `it will be well sealed-a belt and braces procedure` He asked me to return at 3pm. 

 

Six hours after leaving her that morning I finally was allowed into the HDU to see her. I didn`t stay long-she needed rest and care-and would be strictly lying on her back for the next 36 hours.

 

I walked back to my guest house praying that the next few days would go well.

 

Later that night my mobile rang with a message.

 

`Thank you for being there for me today`   it said -........................................

[Louise]

Hi there

 

warm welcome to the site, glad you found us (or Win guided you here)

 

Ah Edinburgh Western General nuro wards know them well...

 

sending you both my best wishes..

[subzero]

With the coiling procedure completed on Thursday-my wife was making good progress. I remember how on the Saturday I was walking towards the hospital entrance and I must have looked as if I was rather worried-shoulders shrugged and head down- a car came towards me and stopped- the driver came up to me and put his hands on my shoulder. It was the Consultant who carried out the coiling- Things went very well he said- she`s going to recover. An unexpected boost to my low morale and a nice touch by a very busy Medic.

 

By Sunday we were told that we would be going back to our local hospital on Tuesday-

 

During the time when I was not visiting-I had made good use of the Hospital Library to find out as much as I could about Wegeners Granulomatosis. It was not pleasant reading.

 

My text to all my supporting friends that night-

 

She`s doing fine- Venflons are out, Nose Feed tube is out- Oxygen mask is away and catheter is out- we`re going home!!!!

 

A patient transport vehicle transported us back- a change from the Ambulance and two paramedics who accompanied us to Edinburgh-

 

We returned to the Renal Ward !!!!!!!!!!!!!!

 

In Edinburgh she had attempted to walk but her legs were very weak and despite the nurses insisting that she get help returning from the bathroom/shower-she fell several time trying to disobey their instructions. Again this happened in her local hospital- I was going to have my hands full!!

 

On Wednesday she was told that she would be discharged on Friday- I was initially filled with apprehension- a week after her brain procedure she would be home!  

 

Her local Consultant confirmed that the coiling was successful- please note all you SAH survivors- we took this comment at it`s face value and from that point totally concentrated on the Wegeners which was still a major issue with my wife`s health. You know from the majority of posts on this Forum-that a successful coiling is not the end of the matter!!!!! not by a long chalk!!! Hence the reason for me visiting this site three and a half years on!

 

Before my wife was discharged I had dealt with some practical issues. Our house was on two floors with bedrooms upstairs and toilet and bathroom downstairs. Our staircase did not have a bannister. My joiner fitted a bannister for me- and our friends also helped me get a bed downstairs to a spare room.

 

On Friday-with the aid of a walking stick-she walked from the hospital exit to my car-and from my car to our house- 

 

The next part of our journey was just beginning!

 

Thanks for staying with me you guys

[Louise]

I see your location is Scotland me too....

[Tina]

Hi a very warm welcome to BTG.

You and your wife have been through so much, thank you for sharing.

I hope your wife is doing well in her recovery and you are taking time out for you too.

Take care both and look forward to reading the next part of your journey.

[subzero]

Prior to her health issues my wife was devoted to her work. She had reached a very responsible position on merit and she thrived on the busy stress filled working day organising meetings, dealing with staff issues, constantly getting challenging deadlines and often trying to meet almost impossible targets-often working at home on her Laptop. I knew facing up to returning to work would be on the agenda at some stage! 

 

But for now, she was my five foot two- two size shoe wife of thirty three years and her body was exhausted and weakened beyond belief. And we still had the Wegeners uncertainty to deal with. But she was a fighter- 

 

I still wanted to try and make her day as normal as could be. She always got up everyday but slept much of the time in our conservatory. Her kidneys had recovered to Stage three which was good-and she was starting to eat small amounts. In these early days I simply seemed to be totally focussed on making sure she took all her medications at the right time-and sat watching her hoping the pills would stay down!

 

I can`t stress enough the importance of rest in these early days. My employers were great and I had full-time leave for two months.

 

Many days we would take our car to the beach esplanade and just sit for ages watching the sea-the birds and passers-by-

 

Her strength was gradually returning and somehow- we managed to fly to Jersey for a weeks holiday in July. She had checked that flying would not affect her SAH. We spent most of the time on the hotel patio overlooking the marina- peace and tranquillity.

 

She also advised DVLC who asked her to check back in six months with a consultants update.

 

I won`t dwell on the Wegeners implications on this site but for those of you who are interested her medication was-

 

Prednisolone Steroids

Cyclophosphamide (a drug which also had a small chemo content which would result in hair loss) and could be cancerous if taken for more than three months. Initially her blood results were off the charts! and this drug had to bring her readings down before this deadline.

Atenalol for her blood pressure.

Calcichew tablets

Co-trimoxazole

Metoclopramide,

Lanzoprazole

Alendronic Acid weekly

At first she had to attend weekly clinics to monitor her blood-then these became fortnightly then monthly-bimonthly and currently she attends quarterly.

 

Warfarin for her DVT- the leg swelling had subsided by now-and a filter which had been inserted in her groin a few hours after her SAH- to avoid the clot moving to hear heart and lungs-unfortunately after six weeks they made an unsuccessful attempt to remove it-which means-warfarin for life.

 

And for her SAH-a supply of Paracetamol for pain- but since her coiling her pain had disappeared.

 

By the end of August I could sense that work was beginning to raise it`s head!  By this time I had done a phased return to work in the third month- I normally worked twelve hour shifts so at least I had four days off. It also meant that my wife was regaining her independence- getting herself up in the morning and taking her tablets-getting showered-she was making progress-

 

and the Wegners was now in remission

[Super Mario]

These updates are very comforting for survivors, especially ones that have had a recent SAH. Thank you.

[subzero]

Hello Carolynusa, Macca, Daffodil, Louise, Tina and Super Mario

 

Many thanks for your comments and interest-

 

The more I read into this site the more I become aware of how important it is for SAH survivors and carers to get encouragement from their peers- I am aware that in my wife`s situation she had extremely serious health issues but early diagnosis and controlled rehabilitation was vital in the recovery she made. Many here have had to contend with situations where recovery has been very demanding for both survivor and carer- and it is great to see so much genuine support from members whatever their circumstances. So encouraging!

 

I mentioned earlier that following the SAH my wife`s vision had been affected. When she was discharged-a visit to the Eye Clinic and a very thorough examination revealed that there were many small haemorrhages behind her eyes.  They were confident that these would clear up within three months and indeed this was what happened.

 

Back to the big issue!  RETURNING TO WORK.

 

From the start-we were both aware that Stress and Wegeners and stress and SAH had to be handled delicately. We would be foolish to halt her good progress by ignoring the facts.

 

Her hair had thinned quite dramatically with the Cyclophosphamide  and her face was puffed up with the steroids. For someone who always liked to present herself well-she handled this as something she would have to work through- I was so encouraged by her positivity. We bought her a good wig which was exactly like her normal hairstyle. She was ready to return to her beloved job!!!            

 

Her employer scheduled a visit with the Occupational Health GP for mid August. It was a good appointment and he stressed that he would arrange a prolonged phased return commencing 26th September- (four months after the SAH) The first four weeks would be for three hours daily Tuesday, Wednesday and Friday stretching to five days of 3 hours by the end of October. He would continue to see her monthly and agree the next schedule. This was so important-having this GP keep strict control of her return. By July the following year 2012- she was back full time- she had proved to herself that she could do it-  Personally from the outset I did not feel that it would be prudent for her to continue indefinitely in the high pressure job- it can be so easy for employers to forget how ill she had been and just pile on the work! 

Until she got her driving licence back Dec 2011 I made sure that taxis were ordered to take her to and from work when I was on my shifts.

 

Our roles at home were completely reversed- She came back from work and made sure that she rested well- I handled all housework. We were both now 55 years old- and I decided to take early retirement Dec 2012. My wife worked on until Aug 2013. Thirteen months in fulltime work was a great achievement.

 

During that time she had two setbacks- It is so important to not get discouraged when problems arise.

 

A month after returning to work she suffered shingles for second time. We were not sure if this was caused by the return to work-or because of the immunosuppressants drugs she was taking to keep her Wegeners in remission. Two weeks off work and the shingles left her with little sensation in her left arm- however every three hours or so the nerve ends which had been damaged sent messages to her brain that her arm was in agony-and for about three minutes she would sit and scream and cry until the pain resided. The pain killer Gabapentin eventually cancelled out the `pain` 

 

During this time her blood results continued to improve and she was getting stronger all the time. Her appetite for food was beginning to match her appetite for work!

 

Then the second setback in January 2012

[Carolynusa]

Oh my gosh Subzero.  You two have really been through it.  My husband and I think about you daily.  Sending positive thoughts your way.  

 

I love the way you are writing this story in chunks.  I didn't, however, like the way this latest one ended.  It just seems like it doesn't stop - probably felt like that for the two of you also.  

 

I've been off for a while but I will check back in to read your story.

 

Take care - much love, carolynusa  

p.s. Win would say to "be well, smile, and do some singing"

[subzero]

Thanks for your wishes Carolynusa

 

Yes -interesting- had Winnie not pointed me in the direction of BTG- .....................

 

She has done something so timely for my SAH journey with my wife.

 

Thanks again for your interest-

[subzero]

Mid January 2012  I was half way through my 12 hour shift-My wife called and said that since getting up she was feeling disorientated and kept bumping into things-and was getting confused.

 

I asked for leave to return home from work-

 

Since getting discharged in June 2011 her Consultant made it clear that I could call him direct at any time if her condition deteriorated. I called him and he asked me to take my wife to the GP to get admitted to A & E and he would have his team ready to see her on arrival. Thankfully my work, the GP and the Hospital are all quite near each other. Going through the GP avoided any queuing at A & E.

 

She was quickly back in his Renal Ward and blood tests off for results. It was revealed that she had extremely high calcium levels and was immediately put on a saline drip.

 

She was also beginning to experience her third bout of shingles-this time it was not the like the cluster on her back and shoulder blades or on her arms-it was affecting different parts of her body- the dreaded Disseminated Shingles-the danger being that it could spread to her brain and cause irreversible damage. Because she was on Immunosuppressant drugs her body could not fight the shingles spreading.

 

All her medication was stopped except her warfarin.

 

She spent two weeks in hospital constantly on the saline drip to reduce the calcium levels to normal.

 

She was alert throughout her stay in hospital and thankfully the shingles was brought under control without any adverse effect.

 

The result of all this............

 

Her previous pain killer Gabapentin was not restarted and the excruciating  post shingles pain did not return,

 

They finally discovered that her Calcichew tablets had been incorrectly dispensed and since the last prescription-a higher level of calcium was building up in her body!!!!! 

 

She was discharged after two weeks and went back to her work on the Monday!  She insisted to her boss that the fortnight be classed as holiday leave as she felt guilty about being off work through illness!! (Winnie-what are you women like!!)

 

(No we did not put in a complaint- we did not want the stresses that could result. The Consultant assured us that he had initiated a Significant Event enquiry and this would be followed through. We did however change our chemist!) 

 

Thank you all who have followed me so far and hope to bring you right up to date next time!

 

Incidentally-I so wish I had found this site from day one- there is so much help within the different Forums and threads-and  so much guidance and information from all posts. 

[subzero]

So here we are 22nd January 2015!

 

Almost three years eight months from my wife`s SAH.

 

She has made remarkable progress given that she also had the Wegeners and the DVT to deal with.

 

She retired from her busy full time work in August 2013 - Although in October 2013 she returned on an Open Contract working two days every week-she wanted to keep her brain active for a while yet doing the job she loves.!!

 

Earlier in my posts I listed her medications. She hated having to rely on pills!!

She is now only on the two maintenance drugs that keep Wegeners in remission- A low dose of Mycophenolate Mofetill(also known as Cell Cept) and her steroid prednisolone. The steroid dosage is very low at 5mg every second day. This is being reduced further with a view to stopping completely within 3 months! It is not easy to stop the steroid-She tried unsuccessfully a year ago. The swelling in her face has gone and during 2012 her hair was returning and she was able to discard the wig following a morale boosting trip to her hair dresser to get a trim!!!

And of course-her Warfarin for life.

 

The numbness and tingling in her left arm caused by the first two bouts of Shingles have now gone completely.

 

Her stamina has increased-and we used to do walks for up to five miles-For the past year she has been able to do this again-but no steep hills and no `power walking`!!

Physical exertion is still a no-no!!! So yours truly is stuck with the washing-ironing-and other household chores-probably permanently now!! She still rests plenty in the evenings and often falls asleep watching TV.

 

What else is different?

I mentioned at the start of my posts that when we were told that her SAH had been fixed when the coiling was completed in 2011-we took that at its face value and forgot about it-We were concentrating on getting the Wegeners under control.

However I had noticed some  `subtle` differences- she had loved watching all the soaps every night.

On discharge she has not watched a soap to date! She says the shouting gets to her.

She also seemed to approach her work with even more vigour- by that I mean that she did not suffer fools gladly and was quite `hatchet` in dealing with staff working sub-standard.

When I was driving she seemed to try and influence my driving decisions-like if she felt I was in the wrong lane-or if I didn`t brake early enough! (with 40 years accident free driving behind me-this new intervention was becoming frustrating) 

And in the past year she had become more confrontational with me-over what I felt was minor things which she would normally have taken in her stride..

 

Perhaps you can tell me-what is going through your minds when you react contrary to your previous selves-do you know before you react but can`t control it-do you feel guilty afterwards-or do you just react and that it that? Do you dwell on what you have said that is out of character?

 

Having started this topic on BGT I have become rather ashamed at my lack of tolerance with these issues- It is clear that my wife has made a somewhat miraculous recovery and suffered a horrendous ordeal in the process .I am immensely proud of her resilience. I have had such helpful comments from some of you and for the past four weeks I have followed many of the personal jouneys of both survivors and carers. Many put my own niggles into true perspective and I feel badly about how I let myself take a `wobble` after three and a half years of life changing drama. We both were concentrating so much on recovery from the Wegeners and failed to recognise that my wife`s reactions were most likely her brain just trying to tell us something.

We are now talking more openly about the SAH and she has promised to view the Thread- A Letter from my Brain -when we finish our meal tonight. I mentioned earlier that we viewed the Survivors Video last week.

 

I will be forever grateful to Winnie who answered a comment I made on another site (no Al-it was not a Lonely Hearts Site-It WAS Medical) and she told me to keep talking-keep loving and keep singing! And of course directed me to BTG.  

 

So  A BIG THANKYOU  BTG  You were there when I needed you-and you are all important.

 

Never give up- keep sharing your feelings -keep talking to people you know who care-and listen to those who have been through it all on a great site like BTG.

[Super Mario]

These updates are definitely going to help survivors. Thank you.

[Daffodil]

Sub zero. I am glad we are up to date in your story and it's fabulous to hear the journey and progress your remarkable wife has made in this time but make no mistake that our progress is often enabled by our best cheer leaders and it sounds like she has a first class one in you.

You asked "Perhaps you can tell me-what is going through your minds when you react contrary to your previous selves-do you know before you react but can`t control it-do you feel guilty afterwards-or do you just react and that it that? Do you dwell on what you have said that is out of character" so I wanted to respond to that.

My SAH was nearly three years ago now and in the six months post I was in and out of hospital and acute care for in excess of 10 weeks. When I finally stayed home it was obvious to all that whilst I may have been noticeably thinner and shaven headed in parts I was also different in character in some ways. My inhibition in hospital had been very odd at times with outbursts and frank talking but that control pretty did all come back but now when I am tired especially I am very quick to say things that I probably would have used to keep to myself.

 

However I am better at apologising if it is inappropriate, ( actually I find most of the time it isn't and people appreciate the frankness once they get over the shock of it, they know I am truthful and never say anything to deliberately wound). So I tend to be more open in my observations, like your driving, that made me laugh. I trust hubby implicitly but react differently in the car than I did with him. He just laughs now, and then we both do.

The other thing is I don't dwell on it, once I have said it Ieave it behind, it's almost like I need to say something out loud that could be causing me worry or distress and then once I have I just get on , that is a gift from my SAH, I don't dwell on anything.

Our partners ,and family members who watch and witness our recovery ,you can observe the changes, the differences in our reactions and I speak personally when I say having understanding why that is and showing some empathy that we are doing the best we can every day even if you aren't that keen on it is a very good thing. You say you haven't been tolerant but I suspect you have and will continue to be.

Best regards to you and your wife.

[Louise]

I never managed back to work, its not always for some of us..

 

my road to recovery was very rocky full of set backs and highs and lows your right keep talking explain what's wrong because otherwise they will never know or understand...

 

take care and keep cosy on those walks...

[subzero]

Thankyou Louise and Daffodil for your comments

Daffodil I appreciate the frank insight into your thinking

I must say that being patient and not expecting any quick fix makes life easier for both- and if at first you don't succeed your carer must keep trying. Time does heal.....

Daffodil- another one that makes me smile is her intollerance of politicians who don't answer the question- --The Prime Minister, The Chancellor of the Exchequer and the Leader of the Scottish Conservatives have all had a bit of backlash by email ,,,, To give them credit she got replies from all!

?

Take care!

[Carolynusa]

Subzero - you made me laugh..or, I should say your wife made me laugh.  In the hospital as I was off and on coming out of my coma I developed a very simple yet complicated system for defining what seems ridiculous to me:  The first time I used it was when a very sweet little nurse told me she had chickens that laid green eggs!  (I don't remember this at all)  I looked at her and announced "That sounds like horse.... to me!"  lol  My husband was humiliated but the nurse and I hugged and laughed a few weeks later when I walked to her ward to thank her.  That word/system is best used on almost all political things or obviously ridiculous advertising claims.  

 

Next thing I remember was that people were always shouting questions at me.  It really upset me.  One of the questions they used over and over and over again was "Who is the President of the United States?"  Remember this is very loud shouting at my poor damaged ears.  The first time I think I forgot and had to be told.  But after that...I would shout right back "BARACK OBAMA!"  Then I started telling them I saw the President out in the hallways.  lol  

 

I'm better now but, the morning after the State of the Union Address I got up ready to pick a fight.  I never do this kind of thing.  I found the first article about it online, scrolled down and saw the negative, mean, sometimes nasty and vile comments about him and typed a response:  Get off his back you Obama Haters!  It may have been stupid but made me very happy.

 

Hug your wife for me.  The both of you are great.  

Carolynusa